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Tag: Massachusetts General Hospital

  • Q&A on Reducing COVID-19 Risk for Elderly, Immunocompromised

    Q&A on Reducing COVID-19 Risk for Elderly, Immunocompromised

    While the risks associated with COVID-19 generally have decreased over time due to prior exposure to the vaccines and the virus, some people remain at elevated risk, such as the elderly and immunocompromised. The updated COVID-19 vaccines and, in some cases, a new monoclonal antibody can provide increased protection for this group.

    “At this point, many people have had multiple vaccines and we are seeing a lot less severe and life-threatening illness, especially in people who have had recent vaccination,” Dr. Camille Kotton, clinical director of Transplant and Immunocompromised Host Infectious Diseases at Massachusetts General Hospital, told us. “Nonetheless, we are still seeing significant severe disease, hospitalization, even life-threatening disease, especially in people over the age of 65 or who are immunocompromised.”

    We spoke with Kotton, who is also a member of the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices, or ACIP, about the current state of affairs for people at elevated risk of severe disease from COVID-19 and the tools they can use to protect themselves.

    FactCheck.org

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  • Anti-Allergy Formula Is on the Rise. Milk Allergies Might Not Be.

    Anti-Allergy Formula Is on the Rise. Milk Allergies Might Not Be.

    This article was originally published by Undark Magazine.

    For Taylor Arnold, a registered dietitian nutritionist, feeding her second baby was not easy. At eight weeks old, he screamed when he ate and wouldn’t gain much weight. Arnold brought him to a gastroenterologist, who diagnosed him with allergic proctocolitis—an immune response to the proteins found in certain foods, which she narrowed down to cow’s milk.

    Cow’s-milk-protein allergies, or CMPA, might be on the rise—following a similar trend in other children’s food allergies—and they can upend a caregiver’s feeding plans: In many cases, a breastfeeding parent is told to eliminate dairy from their diet, or switch to a specialized hypoallergenic formula, which can be expensive.

    But although some evidence suggests that CMPA rates are climbing, the source and extent of that increase remain unclear. Some experts say that the uptick is partly because doctors are getting better at recognizing symptoms. Others claim that the condition is overdiagnosed. And among those who believe that milk-allergy rates are inflated, some suspect that the global formula industry, valued at $55 billion according to a 2022 report from the World Health Organization and UNICEF, may have an undue influence.

    Meanwhile, “no one has ever studied these kids in a systematic way,” Victoria Martin, a pediatric gastroenterologist and allergy researcher at Massachusetts General Hospital, told me. “It’s pretty unusual in disease that is this common, that has been going on for this long, that there hasn’t been more careful, controlled study.”

    This lack of clarity can leave doctors in the dark about how to diagnose the condition and leave parents with more questions than answers about how best to treat it.

    When Arnold’s son became sick with CMPA symptoms, it was “really, really stressful,” she told me. Plus, “I didn’t get a lot of support from the doctors, and that was frustrating.”

    Though the gastroenterologist recommended that she switch to formula, Arnold ultimately used a lactation consultant and gave up dairy so she could continue breastfeeding. But she said she can understand why others might not make the same choice: “A lot of moms go to formula because there’s not a lot of support for how to manage the diet.”

    Food allergies primarily come in two forms: One, called an IgE-mediated allergy, has symptoms that appear soon after ingesting a food—such as swelling, hives, or difficulty breathing—and may be confirmed by a skin-prick test. The second, which Arnold’s son was diagnosed with, is a non-IgE-mediated allergy, or food-protein-induced allergic proctocolitis, and is harder to diagnose.

    With non-IgE allergies, symptom onset doesn’t tend to happen immediately after a person eats a triggering food, and there is no definitive test to confirm a diagnosis. (Some specialists don’t like to call the condition an allergy, because it doesn’t present with classic allergy symptoms.) Instead, physicians often rely on past training, online resources, or published guidelines written by experts in the field, which list symptoms and help doctors make a treatment plan.

    Read: We’ve never been good at feeding babies

    Numerous such guidelines exist to help providers diagnose milk allergies, but the process is not always straightforward. “It’s a perfect storm” of vague and common symptoms and no diagnostic test, Adam Fox, a pediatric allergist and a professor at King’s College London, told me, noting that commercial interests such as formula-company marketing can also be misleading. “It’s not really a surprise that you’ve got confused patients and, frankly, a lot of very confused doctors.”

    Fox is the lead author of the International Milk Allergy in Primary Care, or iMAP, guidelines, one of many similar documents intended to help physicians diagnose CMPA. But some guidelines—including iMAP, which was known as the Milk Allergy in Primary Care Guideline until 2017—have been criticized for listing a broad range of symptoms, like colic, nonspecific rashes, and constipation, which can be common in healthy infants during the first year of their life.

    “Lots of babies cry, or they [regurgitate milk], or they get a little minor rash or something,” Michael Perkin, a pediatric allergist based in the U.K., told me. “But that doesn’t mean they’ve got a pathological process going on.”

    In a paper published online in December 2021, Perkin and colleagues found that in a food-allergy trial, nearly three-quarters of the infants’ parents reported at least two symptoms that matched the iMAP guidelines’ “mild-moderate” non-IgE-mediated cow’s-milk-allergy symptoms, such as vomiting. But another study, whose authors included Perkin and Robert Boyle, a children’s-allergy specialist at Imperial College London, reviewed available evidence and found estimated that only about 1 percent of babies have a milk allergy that has been proved by what’s called a “food challenge,” in which a person is exposed to the allergen and their reactions are monitored.

    That same study reported that as many as 14 percent of families believe their baby has a milk allergy. Another study by Boyle and colleagues showed that milk-allergy formula prescriptions increased 2.8-fold in England from 2007 to 2018. Researchers at the University of Rochester found similar trends stateside: Hypoallergenic-formula sales rose from 4.9 percent of formula sold in the U.S. in 2017 to 7.6 percent in 2019.

    Perkin and Boyle suspect that the formula industry has influenced diagnosis guidelines. In their 2020 report, published in JAMA Pediatrics, they found that 81 percent of authors who had worked on various physicians’ guidelines for the condition—including several for iMAP’s 2013 guidance—reported a financial conflict of interest with formula manufacturers.

    The formula industry also sends representatives and promotional materials to some pediatric clinics. One recent study found that about 85 percent of U.S. pediatricians surveyed reported a visit by a representative, some of whom sponsored meals with them.

    Formula companies “like people getting the idea that whenever a baby cries, or does a runny poo, or anything,” it might be a milk allergy, Boyle told me.

    In response to criticism that the guidelines have influenced the increase in specialized-formula sales, Fox, the lead author of the iMap guidelines, noted that the rise began in the early 2000s. One of the first diagnosis guidelines, meanwhile, was published in 2007. He also said that the symptoms listed in the iMAP guidelines are those outlined by the U.K.’s National Institute for Health and Care Excellence and the U.S.’s National Institute of Allergy and Infectious Diseases.

    As for the conflicts of interest, Fox said: “We never made any money from this; there was never any money for the development of it. We’ve done this with best intentions. We absolutely recognize where that may not have turned out the way that we intended it; we have tried our best to address that.”

    Following backlash over close ties between the formula industry and health-care professionals, including author conflicts of interest, iMAP updated its guidelines in 2019. The new version responded directly to criticism and said the guidelines received no direct industry funding, but it acknowledged “a potential risk of unconscious bias” related to research funding, educational grants, and consultant fees. The authors noted that the new guidelines had tried to mitigate such influence through independent patient input.

    Read: What’s behind America’s shocking baby-formula shortage?

    Fox also said he cut all formula ties in 2018, and led the British Society for Allergy & Clinical Immunology to do the same when he was president.

    I reached out to the Infant Nutrition Council of America, an association of some of the largest U.S. manufacturers of infant formula, multiple times but did not receive any comment in response.

    Though the guidelines have issues, Nigel Rollins, a pediatrician and researcher at the World Health Organization, told me, he sees the rise in diagnoses as driven by formula-industry marketing to parents, which can fuel the idea that fussiness or colic might be signs of a milk allergy. Parents then go to their pediatrician to talk about milk allergy, Rollins said, and “the family doctor isn’t actually well positioned to argue otherwise.”

    Rollins led much of the research in the 2022 report from the WHO and UNICEF, which surveyed more than 8,500 pregnant and postpartum people in eight countries (not including the U.S.). Of those participants, 51 percent were exposed to aggressive formula-milk marketing, which the report states “represents one of the most underappreciated risks to infants and young children’s health.”

    Amy Burris, a pediatric allergist and immunologist at the University of Rochester Medical Center, told me that there are many likely causes of overdiagnosis: “I don’t know that there’s one particular thing that stands out in my head as the reason it’s overdiagnosed.”

    Some physicians rely on their own criteria, rather than the guidelines, to diagnose non-IgE milk allergy—for instance, conducting a test that detects microscopic blood in stool. But Burris and Rollins both pointed out that healthy infants, or infants who have recently had a virus or stomach bug, can have traces of blood in their stool too.

    Martin, the allergy researcher at Massachusetts General Hospital, said the better way to confirm an infant dairy allergy is to reintroduce milk about a month after it has been eliminated: If the symptoms reappear, then the baby most likely has the allergy. The guidelines say to do this, but both Martin and Perkin told me that this almost never happens; parents can be reluctant to reintroduce a food if their baby seems better without it.

    “I wish every physician followed the guidelines right now, until we write better guidelines, because, unequivocally, what folks are doing not following the guidelines is worse,” Martin said, adding that kids are on a restricted diet for a longer time than they should be.

    Giving up potentially allergenic foods, including dairy, isn’t without consequences. “I think there’s a lot of potential risk in having moms unnecessarily avoid cow’s milk or other foods,” Burris said. “Also, you’re putting the breastfeeding relationship at risk.”

    By the time Burris sees a baby, she said, the mother has in many cases already given up breastfeeding after a primary-care provider suggested a food allergy, and “at that point, it’s too late to restimulate the supply.” It also remains an open question whether allergens in breast milk actually trigger infant allergies. According to Perkin, the amount of cow’s-milk protein that enters breast milk is “tiny.”

    For babies, Martin said, dietary elimination may affect sensitivity to other foods. She pointed to research indicating that early introduction of food allergens such as peanuts can reduce the likelihood of developing allergies.

    Martin also said that some babies with a CMPA diagnosis may not have to give up milk entirely. She led a 2020 study suggesting that even when parents don’t elect to make any dietary changes for babies with a non-IgE-mediated food-allergy diagnosis, they later report an improvement in their baby’s symptoms by taking other steps, such as acid suppression. But when parents do make changes to their baby’s diet, in Martin’s experience, if they later reintroduce milk, “the vast majority of them do fine,” she said. “I think some people would argue that maybe you had the wrong diagnosis initially. But I think the other possibility is that it’s the right diagnosis; it just turns around pretty fast.”

    Still, many parents who give up dairy or switch to a hypoallergenic formula report an improvement in their baby’s symptoms. Arnold said her son’s symptoms improved when she eliminated dairy. But when he was about eight months old, they reintroduced the food group to his diet, and he had no issues.

    Whether that’s because the cow’s-milk-protein allergy was short-lived or because his symptoms were due to something else is unclear. But Arnold sees moms self-diagnosing their baby with food allergies on social media, and believes that many are experiencing a placebo effect when they say their baby improves. “Nobody’s immune to that. Even me,” she said. “There’s absolutely a chance that that was the case with my baby.”

    Christina Szalinski

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  • Ozempic in Teens Is a Confusing Mess

    Ozempic in Teens Is a Confusing Mess

    Somehow, America’s desire for Ozempic is only growing. The drug’s active ingredient, semaglutide, is sold as an obesity medication under the brand name Wegovy—and it has become so popular that its manufacturer, Novo Nordisk, recently limited shipments to the U.S. and paused advertising to prevent shortages. Its promise has enticed would-be patients and set off a pharmaceutical arms race to create more potent drugs.

    Part of the interest stems from Ozempic’s potential in teens: In December, the FDA approved Wegovy as a treatment for teenagers with obesity, which affects 22 percent of 12-to-19-year-olds in the United States. The drug’s ability to spur weight loss in adolescents has been described as “mind-blowing.” In January, in its new childhood-obesity-treatment guidelines, the American Academy of Pediatrics (AAP) recommended that doctors consider adding weight-loss drugs such as semaglutide as a treatment for some patients.

    But although many doctors and obesity experts have embraced semaglutide as a treatment for adults, some are concerned that taking it at such a young age—and at such a precarious stage of life—could pose serious risks, especially because the long-term physical and mental-health effects of the medication are still unknown. Others, however, believe that not using this medication in adolescents is riskier, because obesity makes teens vulnerable to serious health conditions and premature death. In part because of the apprehension among doctors, prescriptions for semaglutide in teens are not taking off like they are for adults. At this point, whether these drugs will ever catch on as a treatment for teens remains deeply uncertain.

    Semaglutide isn’t just effective for teens; it may be even more effective than it is in adults. In a large Novo Nordisk–funded study published in The New England Journal of Medicine, “the degree of weight reduction in adolescents was better than what was observed in the adult trials,” Aaron S. Kelly, a co-director of the Center for Pediatric Obesity Medicine at the University of Minnesota Medical School, told me. In another Novo Nordisk–funded study published last week, a team led by Kelly showed that the drug, combined with counseling and exercise, nearly halved the number of teens with obesity after they received 68 weeks of treatment. Both for adolescents and adults, the weekly injection doesn’t “magically melt away body fat,” Kelly said; instead, it works by triggering a sense of fullness and quieting hunger pangs.

    Teenagers’ experience with obesity is different—in some ways more intense—than that of older people. Puberty is a time of lots of growth and development, so the body fights off attempts at weight loss “with every mechanism that it has,” Tamara Hannon, a pediatric endocrinologist at the Indiana University School of Medicine, told me. Teenagers may also have less control than adults over what they eat or how much activity they get, because these are largely circumscribed by their family and school, as well as by social pressure to conform to how their peers eat. “Making good choices means doing something different than the majority of the other kids,” Hannon said. “At every corner, there’s something that is in direct opposition to losing weight.”

    Because obesity is a chronic disease, developing it early can be devastating. In many cases, it can result in illnesses such as type 2 diabetes and fatty liver at a young age. Children with obesity are five times more likely than their peers to have it in adulthood; as teens with obesity become adults with obesity, they can “develop very, very aggressive disease,” Fatima Stanford, an obesity-medicine physician at Massachusetts General Hospital and Harvard Medical School, told me. Weight-loss drugs give doctors the ability to intervene before the effects of obesity snowball, she said, which is why AAP’s new childhood-obesity guidelines advocate for using them as part of early, aggressive treatment—along with many hours of in-person health and lifestyle therapy. Used early enough, semaglutide or other medications could possibly reroute the trajectory of a teenager’s entire life.

    But semaglutide could also possibly throw a teen’s trajectory off course. Because treatment is considered a lifelong endeavor—stopping usually leads to rapid weight regain—adolescents who start the medication will be taking it for many decades. “We have no way of knowing whether these drugs, used so early in life for so long, could have unanticipated adverse effects,” David Ludwig, an endocrinologist at Boston Children’s Hospital, told me. Although adults face many of the same unknowns, the risks for teens could be more severe, because their body and brain are in constant flux. Of particular concern are the drug’s potential impacts on physiological changes specific to adolescence. “We need to keep an eye on pubertal development and menstrual history for girls,” Hannon said. In addition, the drugs can lead to unsavory side effects such as gastrointestinal issues and may have other impacts, including significant muscle loss and rewiring of the brain’s reward circuitry. Scientists are just beginning to understand these effects; at this point, only two major studies have been conducted on semaglutide in teens, and neither has involved a long follow-up period.

    The repercussions of semaglutide treatment on mental health, an important aspect of obesity care, are even less understood. Teens are “more likely than an adult to have intermittent access to medication,” Kathleen Miller, an adolescent-medicine specialist at Children’s Minnesota hospital, told me—and skipping several doses in a row could pose physical and well as psychological risks. Another concern is that the overall effect of taking semaglutide—a decreased appetite, which leads to eating less—is essentially the same as that of dieting. When teens go on very restrictive diets, whether or not they involve weight-loss medications, “we know that may be harmful to their mental health and promote disordered eating,” Hannon said. Because their brain is so plastic during puberty, “there’s a risk of ingraining those patterns in adolescence,” Miller said.

    With so many unknowns, would teens with obesity be better off avoiding semaglutide? At least for now, many pediatricians are reluctant to prescribe it. “The idea of using anti-obesity pharmacotherapy was challenging even in adults a couple of years ago,” says Angela Fitch, an assistant professor at Harvard Medical School and the president of the Obesity Medicine Association; acceptance of its role in pediatric care is even further behind. But denying teens the drug, she told me, is the biggest risk: Teens develop an unhealthy mentality about their body when they don’t get help losing weight. Explaining to a teen that obesity is not their fault, and correcting the underlying biological issue with medication or other treatment, helps them to develop “a better body image about themselves,” she said.

    None of the experts I spoke with flat-out said that semaglutide should never be used in adolescent treatment. Even those who were wary of the drug acknowledged that it might be medically appropriate in teens who really struggle with their weight and have little success losing it through any other means. That argument may only strengthen as more convenient drugs—or those with fewer side effects—are approved for teen use. This week, both Novo Nordisk and Pfizer announced that pill versions of these medications were successful in early trials.

    Even without all of the answers on how this drug might affect teens in the long term, Fitch predicted that “the uptake of semaglutide and other anti-obesity medications in pediatric clinical care will be slow and gradual.” Eventually, they may come to be seen as just one of several weight-loss tools to help set up kids for healthier lives. Treating adolescent obesity shouldn’t be an “either-or” choice, Ludwig said: “It’s everything-and.” He has proposed that combining semaglutide with a low-carbohydrate diet, for example, could have synergistic effects on adolescent weight loss.

    For the foreseeable future, semaglutide isn’t poised to take off for teens in the way that it has for adults. In spite of all the hype surrounding Ozempic, experts and their patients are left with a difficult choice based on different assessments of risk: what might happen if teens are treated with drugs, and what might happen if they’re not. Either way, teenagers have the most to benefit—and the most to lose.

    Yasmin Tayag

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  • Pediatric ICUs face bed shortage amid RSV surge: “It’s not hyperbole to call it a crisis”

    Pediatric ICUs face bed shortage amid RSV surge: “It’s not hyperbole to call it a crisis”

    Boston — For every patient discharged from the pediatric intensive care unit at Mass General for Children in Boston, three more are waiting for that bed. A surge in cases of respiratory syncytial virus, also known as RSV, has hospitals nationwide struggling to treat patients. 

    “I’ve never seen, in my 26 years, the capacity issues. There’s no PICU beds in the Northeast,” said Kimberly Whalen, the nursing director of the 14-bed unit. 

    When Gabriella Boulting saw her 1-month-old gasping for air, she called a pediatrician who sent her to the local hospital. The baby, Alma, was then transferred to Mass General. 

    “She went from breastfeeding to being intubated in just one day. And I was so shocked at how fast that change happened,” Boulting said. “It was certainly a concern whether or not we were going to be able to find a bed. My husband and I even started calling everyone we know who we could think of, who had any affiliation with the hospitals.” 

    Alma did get a bed, but had to wait more than six hours for it and for an ambulance to be ready. 

    Dr. Paul Biddinger, who oversees Mass General’s emergency preparedness, says the hospital has been forced to move some children into the adult ICU. 

    “It’s not hyperbole to call it a crisis,” he said. “In the last three years, the health care system has shown extraordinary flexibility in creating critical care spaces when they’re needed.” 

    Across the country, 36 states are seeing elevated levels of RSV cases compared to this time last year, according to the Centers for Disease Control and Prevention. Hospitals in 10 states are at or above 80% capacity, according to the Health and Human Services Department. 

    Many hospitals converted pediatric beds to adult beds during the pandemic, and some have not switched them back, contributing to the shortage. 

    Despite the challenges, Biddinger urges parents to bring their child in at the first sign of respiratory distress. 

    “They should know that all of us in health care are doing everything we can so that when a child is sick, we can deliver the care immediately in a timely fashion,” he said. “We will find a hospital bed for that patient.”

    Norah O’Donnell


    Norah O'Donnell

    Norah O’Donnell is the anchor and managing editor of the “CBS Evening News.” She also contributes to “60 Minutes.”

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  • Doctors Are Failing Patients With Disabilities

    Doctors Are Failing Patients With Disabilities

    This piece was originally published by Undark Magazine.

    Ben Salentine, the associate director of health-sciences managed care at the University of Illinois Hospital and Health Sciences System, hasn’t been weighed in more than a decade. His doctors “just kind of guess” his weight, he says, because they don’t have a wheelchair-accessible scale.

    He’s far from alone. Many people with disabilities describe challenges in finding physicians prepared to care for them. “You would assume that medical spaces would be the most accessible places there are, and they’re not,” says Angel Miles, a rehabilitation-program specialist at the Administration for Community Living, part of the Department of Health and Human Services.

    Not only do many clinics lack the necessary equipment—such as scales that can accommodate people who use wheelchairs—but at least some physicians actively avoid patients with disabilities, using excuses like “I’m not taking new patients” or “You need a specialist,” according to a paper in the October 2022 issue of Health Affairs.

    The work, which analyzed focus-group discussions with 22 physicians, adds context to a larger study published in February 2021 (also in Health Affairs) that showed that only 56 percent of doctors “strongly” welcome patients with disabilities into their practice. Less than half were “very confident” that they could provide the same quality of care to people with disabilities as they could to other patients. The studies add to a larger body of research suggesting that patients with conditions that doctors may deem difficult to treat often struggle to find quality care. The Americans With Disabilities Act of 1990 (ADA) theoretically protects the one in four adults in the U.S. with a disability from discrimination in public and private medical practices—but enforcing it is a challenge.

    Laura VanPuymbrouck, an assistant professor in the Department of Occupational Therapy at Rush University, calls the 2021 survey “groundbreaking—it was the crack that broke the dam a little bit.” Now researchers are hoping that medical schools, payers, and the Joint Commission (a group that accredits hospitals) will push health-care providers for more equitable care.

    Due in part to scant data, information about health care for people with disabilities is limited, according to Tara Lagu, a co-author of both the 2021 and 2022 papers and the director of the Institute for Public Health and Medicine’s Center for Health Services & Outcomes Research at Northwestern University Feinberg School of Medicine. The few studies that have been done suggest that people with disabilities get preventive care less frequently and have worse outcomes than their nondisabled counterparts.

    About a decade ago, Lagu was discharging a patient who was partially paralyzed and used a wheelchair. The patient’s discharge notes repeatedly recommended an appointment with a specialist, but it hadn’t happened. Lagu asked why. Eventually, the patient’s adult daughter told Lagu that she hadn’t been able to find a specialist who would see a patient in a wheelchair. Incredulous, Lagu started making calls. “I could not find that kind of doctor within 100 miles of her house who would see her,” she says, “unless she came in an ambulance and was transferred to an exam table by EMS—which would have cost her family more than $1,000 out of pocket.”

    In recent years, studies have shown that even when patients with disabilities can see physicians, their doctors’ biases toward conditions such as obesity, intellectual disabilities, and substance-use disorders can have profound impacts on the care they receive. Physicians may assume that an individual’s symptoms are caused by obesity and tell them to lose weight before considering tests.

    For one patient, this meant a seriously delayed diagnosis of lung cancer. Patients with mobility or intellectual challenges are often assumed to be celibate, so their providers skip any discussion of sexual health. Those in wheelchairs may not get weighed even if they’re pregnant—a time when tracking one’s weight is especially important, because gaining too little or too much is associated with the baby being at risk for developmental delays or the mother being at risk for complications during delivery.

    These issues are well known to Lisa Iezzoni, a health-policy researcher at Massachusetts General Hospital and a professor of medicine at Harvard Medical School. Over the past 25 years, Iezzoni has interviewed about 300 people with disabilities for her research into their health-care experiences and outcomes, and she realized that “every single person with a disability tells me their doctors don’t respect them, has erroneous assumptions about them, or is clueless about how to provide care.” In 2016, she decided it was time to talk to doctors. Once the National Institutes of Health funded the work, she and Lagu recruited the 714 physicians that took the survey for the study published in 2021 in Health Affairs.

    Not only did many doctors report feeling incapable of properly caring for people with disabilities, but a large majority held the false belief that those patients have a worse quality of life, which could prompt them to offer fewer treatment options.

    During the 2021 study, Iezzoni’s team recorded three focus-group discussions with 22 anonymous physicians. Although the open-ended discussions weren’t included in the initial publication, Lagu says she was “completely shocked” by some of the comments. Some doctors in the focus groups welcomed the idea of additional education to help them better care for patients with disabilities, but others said that they were overburdened and that the 15 minutes typically allotted for office visits aren’t enough to provide these patients with proper care. Still others “started to describe that they felt these patients were a burden and that they would discharge patients with disability from their practice,” Lagu says. “We had to write it up.”

    Read: How wheelchair accessibility ramped up

    The American Medical Association, the largest professional organization representing doctors, declined an interview request and would not comment on the most recent Health Affairs study. When asked about the organization’s policies on caring for patients with disabilities, a representative pointed to the AMA’s strategic plan, which includes a commitment to equity.

    Patients with disabilities are supposed to be protected by law. Nearly 50 years ago, Congress passed Section 504 of the Rehabilitation Act of 1973, which prohibited any programs that receive federal funding, such as Medicare and Medicaid, from excluding or discriminating against individuals with disabilities. In 1990, the ADA mandated that public and private institutions also provide these protections.

    The ADA offers some guidelines for accessible buildings, including requiring ramps, but it does not specify details about medical equipment, such as adjustable exam tables and wheelchair-accessible scales. Although these items are necessary to provide adequate care for many people with disabilities, many facilities lack them: In a recent California survey, for instance, only 19.1 percent of doctor’s offices had adjustable exam tables, and only 10.9 percent had wheelchair-accessible scales.

    Miles says she’s noticed an improvement in care since the ADA went into effect, but she still frequently experiences challenges in health care as a Black woman who uses a wheelchair. “We need to keep in mind the ADA is not a building code. It’s a civil-rights law,” says Heidi Johnson-Wright, an ADA coordinator for Miami-Dade County in Florida, who was not speaking on behalf of the county. “If I don’t have access to a wellness check at a doctor’s office or treatment at a hospital, then you’re basically denying me my civil rights.”

    The ADA isn’t easy to enforce. There are no “ADA police,” Johnson-Wright says, to check if doctor’s offices and hospitals are accessible. In many cases, a private citizen or the Department of Justice has to sue a business or an institution believed to be in violation of the ADA. Lawyers have filed more than 10,000 ADA Title III lawsuits each year since 2018. Some people, sympathizing with businesses and doctors, accuse the plaintiffs of profiteering.

    And it’s not just about accessible equipment. In 2018, the Justice Department sued a skilled nursing facility for violating the ADA, after the facility refused to treat a patient with a substance-use disorder who needed medication to help maintain sobriety. Since then, the department settled with eight other skilled nursing facilities for similar discrimination. “It is a violation of the ADA” to deny someone care based on the medications they need, Sarah Wakeman, an addiction-medicine specialist at Massachusetts General Hospital, wrote in an email, “and yet continues to happen.”

    Indeed, in the focus groups led by Lagu and Iezzoni, some of the doctors revealed that they view the ADA and the people it protects with contempt. One called people with disabilities “an entitled population.” Another said that the ADA works “against physicians.”

    The Department of Health and Human Services is aware of the issue. In a response to emailed questions, an HHS spokesperson wrote, “While we recognize the progress of the ADA, important work remains to uphold the rights of people with disabilities.” The Office of Civil Rights, the spokesperson continued, “has taken a number of important actions to ensure that health care providers do not deny health care to individuals on the basis of disability and to guarantee that people with disabilities have full access to reasonable accommodations when receiving health care and human services, free of discriminatory barriers and bias.”

    Researchers and advocates told me that the key to improving health care for those with disabilities is addressing it directly in medical education and training. “People with disabilities are probably one of the larger populations” that physicians serve, Salentine said.

    Ryan McGraw, a community organizer with Access Living, helps provide education about treating patients with disabilities to medical schools in the Chicago area. He regularly receives positive feedback from medical students but says the information needs to be embedded in the medical-school curriculum, so it’s not “one and done.”

    In one effort to address the issue, the Alliance for Disabilities in Health Care Education, a coalition of professionals and educators of which McGraw is a member, put together a list of 10 core competencies that should be included in a doctor’s education, including considerations for accessibility, effective communication, and patient-centered decision making.

    Read: What police offers don’t know about the ADA

    One of the simplest solutions might be hanging signs or providing accessible information in exam rooms on patients’ rights. “It’d be there for patients, but it’d be also there as a reminder to the providers. I think that’s a super easy thing to do,” Laura VanPuymbrouck says. Miles says this could be a good start, but “it’s not enough to just give people a little pamphlet that tells you about your rights as a patient.” Although all doctors should be willing and able to care for patients with disabilities, she thinks a registry that shows which providers take certain types of insurance, such as Medicaid, and also have disability accommodations, such as wheelchair-accessible equipment, would go a long way.

    Some advocates have called on the Joint Commission for more than 10 years to require disability accommodations for hospitals that want accreditation. The step could be effective, because accreditation “is extremely important” to hospitals, Lagu says.

    On January 1, 2023, new Joint Commission guidelines will require that hospitals create plans to identify and reduce at least one health-care disparity among their patients. Improving outcomes for people with disabilities could be one such goal. However, Maureen Lyons, a spokesperson for the Joint Commission, adds, “if individuals circumvent the law, standards won’t be any more effective.”

    Finally, Lagu says, “we have to pay more when you are providing accommodations that take time or cost money. There’s got to be some accounting for that in the way we pay physicians.”

    One of the most basic things people with disabilities are asking for is respect. The biggest finding of the 2021 survey, Iezzoni says, is that doctors don’t realize that the proper way to determine what accommodations a facility needs for patients with disabilities is to just ask the patients.

    “I can’t tell you how many times I go to a doctor’s office and I’m talking, but they’re not hearing anything,” Salentine says. “They’re ready to speak over me.”

    Emma Yasinski

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  • New mitochondrial disease identified in identical twins

    New mitochondrial disease identified in identical twins

    Key Takeaways

    • In a set of identical twins, investigators have discovered a disease that affects the mitochondria, or the specialized compartments within cells that produce energy
    • Unlike in other mitochondrial diseases, mitochondria were hyperactive in these cases, so that even though the siblings had a high intake of calories, their body weights remained very low

    Newswise — BOSTON – In a set of identical twins, investigators led by researchers at Massachusetts General Hospital (MGH) and Children’s Hospital Philadelphia (CHOP) have identified a mitochondrial disease not previously reported.

    Diseases that affect mitochondria—specialized compartments within cells that contain their own DNA and convert the food we eat into energy needed to sustain life—typically interfere with mitochondrial function, but in these two patients, mitochondria were hyperactive.

    So, as reported in the New England Journal of Medicine, even though the siblings were eating far more calories than needed, their body weights remained very low.

    “This is a highly unusual mitochondrial phenotype. There are more than 300 rare genetic mitochondrial diseases, and nearly all of them are associated with an interruption of mitochondria,” says senior author Vamsi K. Mootha, MD, a Professor of Systems Biology and Medicine at MGH.

    Genome sequencing revealed a mutation in an enzyme called the mitochondrial ATP synthase, which is required by cells to generate the energy storage molecule ATP.

    Experiments indicated that this mutation creates “leaky” mitochondria that dissipate energy—a process called mitochondrial uncoupling.

    “We propose a new name—mitochondrial uncoupling syndrome—that presents with hypermetabolism and uncoupled mitochondria,” says Mootha. “These cases are very important for the field of rare disease genetics, mitochondrial biology, and metabolism.”

    The authors note that additional studies on mitochondrial uncoupling syndromes may provide insights into differences in energy metabolism in the general population.

    “These twins represent the first disorder of mitochondrial uncoupling where we have been able to find the genetic cause,” said Rebecca D. Ganetzky, MD, an attending physician in Mitochondrial Medicine program at CHOP and co-author of the study.

    “By discovering that pathogenic variants in the ATP synthase itself can cause mitochondrial uncoupling, these twins may be the first identified patients in a whole class of diseases of mitochondrial coupling.”

    Additional co-authors include Andrew L. Markhard, BA, Irene Yee, BS, Sheila Clever, MSc, Alan Cahill, PhD, Hardik Shah, MS, Zenon Grabarek, PhD, and Tsz-Leung To, PhD.

    This work was supported by the National Institutes of Health and others.

    About the Massachusetts General Hospital

    Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In July 2022, Mass General was named #8 in the U.S. News & World Report list of “America’s Best Hospitals.” MGH is a founding member of the Mass General Brigham healthcare system.

    Massachusetts General Hospital

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  • Researchers develop system for generating oxygen within cells

    Researchers develop system for generating oxygen within cells

    Key Takeaways

    • With a newly developed technology, scientists can engineer cells to produce oxygen on demand in response to an added chemical
    • The advance can be used to evaluate the role of oxygen within cells and may have a variety of clinical uses in the future

    Newswise — BOSTON – Oxygen is vital for life, and clinicians can provide supplemental oxygen to patients through face masks and nasal tubes, but there are no methods available for delivering oxygen directly into cells.

    This capability would be useful initially as a research tool but could eventually have important medical applications—for example, to enhance therapies that lose effectiveness when oxygen levels are low. 

    As reported in PNAS, investigators at Massachusetts General Hospital (MGH) recently developed a technology that allows them to engineer cells to make oxygen on demand in response to an added chemical. 

    The work was led by Vamsi K. Mootha, MD, a Professor of Systems Biology and Medicine in the Department of Molecular Biology at MGH, whose laboratory focuses on mitochondria. These specialized compartments within cells produce energy, and they require oxygen to do so. “We are interested in how mitochondria, cells, and organisms adapt to changes in ambient oxygen,” says Mootha.

    Currently, if the scientists want to manipulate cells’ oxygen levels in the lab, they place a petri dish containing cells in an environmentally controlled chamber. While this is useful, they can’t change oxygen levels in select cells at a specific time.

    “From this need came the idea for a genetically encoded system that could be deployed in human cells to produce their own oxygen on demand,” says Mootha.

    The technology involves simultaneously expressing a transporter and a bacterial enzyme within a cell—together, these proteins promote the uptake of chlorite into the cell and enzymatically convert it into oxygen and chloride.

    The researchers call their new genetic technology SNORCL, for SupplemeNtal Oxygen Released from ChLorite.  The first generation SNORCL is capable of producing short and modest pulses of oxygen inside of cells in response to added chlorite. 

    “In the near-term SNORCL is really for the research arena, for evaluating the role of oxygen in signaling, metabolism, and physiology in great detail. But then in the future, technologies based on SNORCL could have a variety of clinical uses,” says Mootha.

    For example, tumors often have low oxygen levels that limit the effectiveness of some anti-cancer therapies. SNORCL might be used to improve these therapies’ effectiveness in such environments.

    Additional co-authors include Andrew L. Markhard, Jason G. McCoy, and Tsz-Leung To.

    This work was supported by the Howard Hughes Medical Institute.

    Paper Cited:

    Markhard, A. L., McCoy, J. G., To, T. L., & Mootha, V. K. (2022). A genetically encoded system for oxygen generation in living cells. Proceedings of the National Academy of Sciences of the United States of America, 119(43), e2207955119. https://doi.org/10.1073/pnas.2207955119

    About the Massachusetts General Hospital

    Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In July 2022, Mass General was named #8 in the U.S. News & World Report list of “America’s Best Hospitals.” MGH is a founding member of the Mass General Brigham healthcare system.

    Massachusetts General Hospital

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